Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Sunday, September 1, 2013

T+39 Slowly getting better

Well we are still in the hospital although day by day he is getting better. He is getting an albuterol/pulmicort/ativant (Steroids) nebulizer cocktail 4 times a day since Friday. It seems to be opening up the lungs. He also gets deep suctioned after every treatment down the nose and into the back of the throat. I'm amazed at all the sticky goop he regenerates every 4 hrs. As you can imagine neither one of these treatments he enjoys... (who would?!) so we have to hold him down. They tried putting a warm mist high flow nasal cannula on last night but he really wanted nothing to do with it so it came back off. His sats are back up on room air thought we still have the blow by on and near him in case it drops (which is does periodically, especially at night). None of the cultures came b...ack positive for various viruses so they think it is just the common cold, which just proves how fragile BMT kiddos are. A common cold could be life threatening. The fight against the cold led to his lungs getting weak and even more compromised and the capillaries started to close like an asthmatic type of response.
On the positive side, since his vomiting has decreased (only once yesterday morning) I have been upping his g-Tube feeds and I hope we will be able to go home without TPN. Although I still think they rate is way to high. He is gaining weight and getting a bit bloated. I'm hoping the dietician realizes that he never ate this much pre-BMT muck less will eat that much post.
And Peyton comes back today. We could all use a little sunshine in our lives right about now. Coleson especially.